Over the past couple of years, the spinal muscular atrophy (SMA) community has taken a stab at everything from songwriting and producing to fashion design and walking the runway.
Now, an SMA-focused musical is making its way to Manhattan.
“Most Likely Not To” will premiere at the Times Center in New York on February 29 — which is Rare Disease Day — and stars members of the SMA community, who also wrote the show. For those who can’t see it in-person, the show will be livestreamed at MostLikelyNotTo.com.
The musical comedy, which is being supported by Genentech through its ongoing SMA My Way initiative, takes its name from a play on the idea of high school superlatives.
As a rare disease that affects between 10,000 to 25,000 Americans, SMA is best characterized by muscles and nerves that become progressively weaker over time.
Many members of the patient population said that from a young age, they were considered “most likely not to” achieve certain goals.
Irreverence with a purpose
For Joel Manuel, a cast member who has SMA, the process of putting on “Most Likely Not To” was “refreshing” and noted that representation of people living with disabilities was a key factor in the show’s development.
He added that while the show is irreverent in nature, it is also wholesome and purposeful in terms of raising the profile of the lived experiences of the SMA community.
“Putting this together was about trying to tell those well-rounded stories and present people with disabilities as equal, first and foremost,” he said.
Manuel added that one aspect of the show that encouraged him was seeing the cast members’ feedback incorporated into the script in a way that avoided typical tropes of inspiration or addressing living with a disability in a “pandering way.” Instead, he noted, the message the show is delivering is one that is more inclusive and equitable in nature.
Allegra Keys lives with SMA and served as a writer for the show, incorporating her own story of a travel debacle as part of the plotline.
Without spoiling anything ahead of the show’s debut, Keys related how a broken wheelchair can ruin a dream vacation, which is something that many outside of the patient population may not be as familiar with. That’s especially true when you consider that the wheelchair provides not only physical comfort to many who live with SMA but also the independence to live their life to the fullest.
She said the show was a collaborative effort comparable to a TV show writer’s room, with team members responding to Genentech prompts about experiences related to travel and high school.
Then, a professional writer was hired to produce a draft script and after a couple of revisions, “Most Likely Not To” was born.
“It was amazing to be given the opportunity and safe space to share our voices and experience a writers’ room full of people with SMA,” Keys said. “That’s never been done before and it was such an honor to be in the room where it happened.”
Though the stories shared in the writers’ room were based on stories from within the SMA community, Keys added that they are relatable to anyone who has had to travel with a mobility device, which makes it more relatable.
Genentech’s support continues
“Most Likely Not To” yet again exemplifies Genentech’s steadfast support of the SMA community, especially through initiatives involving the arts.
In 2022, James Ian, a singer-songwriter who lives with type 3 SMA, performed “Spaces,” a song conceived, written and produced by members of the SMA community, at the Special Olympics USA Games.
At the end of that year, James and other members of the community walked the runway as part of the Double Take Fashion Show during New York Fashion Week. The event was such a success that the independent subsidiary of Roche ran it back last year.
Part of what has made these productions and events resonate so deeply not only with the general public but the patient advocates is the freedom for them to call the shots from a creative standpoint.
Adam Pryor, the neuroscience and rare disease public relations lead at Genentech, echoed the stars’ sentiment and said that while he can’t fully understand the issues they face on a daily basis, he can empathize with them and use his role to elevate their voices.
When composing the writers’ room and working with professionals to put the show on, Pryor said the questions asked of people living with SMA focused on how they wanted to be represented and which topic areas should get more attention.
He added that the company’s paramount objective with SMA My Way is to present the community as multifaceted individuals who talk about the same things as everyone else — including sex, love and dating.
“The play takes a subversive approach to help elevate those themes and the goal is that it helps advance societal discourse around ableism, representation of disabilities in the media and authentic representation,” he said.
